Abstract
Introduction: Living with sickle cell disease (SCD) and its associated complications and treatment can impact adolescent coping and adjustment, including peer relationships, participating in physical activities, and academic performance. Understanding the adolescent perspective on SCD and its impact on life activities will enable healthcare professionals to develop focused interventions to improve quality of life for adolescents and young adults (AYA) living with SCD.
Objectives: To examine adolescent understanding of SCD and its impact on psychosocial functioning using exploratory qualitative research methodology.
Methods: Twenty-one participants (ages 12-21 years old, median: 17 years, 12 female) with a diagnosis of sickle cell anemia (any variant) participated in IRB approved semi-structured interviews. Participants were recruited at routine sickle cell clinic visits and were on various treatment regimens such as chronic transfusions or Hydroxyurea. The interview protocol was piloted with AYA patients for content, understandability, and face validity. All interviews were recorded and transcribed by a single interviewer. All interview transcripts were independently coded by two researchers (In Vivo coding: codes are direct quotes) and required 100% agreement for a code to be included in the final codebook. Using the constant comparative method, codes were placed into categories and themes. A final construct of codes, categories, and themes was agreed upon by three researchers with expertise in psychology and SCD. Interviews did not continue past 21 participants since no new categories or themes were identified during the final interviews.
Results: The overarching theme that emerged was the impact of SCD on psychosocial functioning of AYA as it related to coping and adjustment strategies. Three main subthemes relating to coping and adjustment were noted: social support, pain, and transition to adult care. Participants (20/21) reported sharing information about SCD with peers with and without SCD, with several expressing benefits to disclosure; “felt good to talk about it and get it off my chest,” “[friends] they help me out too. They get me water and take care of me.” All participants described benefits of developing relationships with other AYA with SCD and expressed a desire to meet peers with SCD; “it helps because they really know how you feel and what you go through,” “it would be helpful to hear about other people’s experiences and tips for dealing with things.” Participants (18/21) described their disease in terms of pain. Unpredictable pain events negatively impacted relationships with peers; “if I’m out and start feeling bad…it just reminds me that I’m not like everybody else.” Participants (2/21) described balancing taking medication to relieve pain and avoiding becoming dependent on pain medication. Primary concerns about transitioning to adult care included being viewed as drug-seeking by adult emergency department personnel and trusting an unfamiliar doctor’s judgment about their care and willingness to learn how their disease affected them as an individual. Surprisingly, 7/21 participants expressed some positive experiences from living with SCD including feeling “special,” “stronger and better,” and having a different perspective on life than peers without SCD.
Conclusion: During adolescence, peer interactions play a major role in social and emotional development. Our findings strongly support the need for AYA with SCD to have opportunities to interact with healthy peers as well as those experiencing similar struggles related to SCD (SCD summer camps, social networking, teen support groups or mentoring). Participants identified pain as a defining characteristic of living with SCD and commented only on pharmacologic pain management. Participants expressed anxiety related to transitioning to adult care with particular focus on inadequate pain management at adult institutions. Our results suggest: 1) medical centers should focus on educating teens about pain and developing pain protocols that highlight teaching non-pharmacologic pain management strategies 2) improved pain management will positively impact quality of life and reduce anxiety about transition. Additionally, participants identified benefits to living with SCD, and future research should identify strategies to promote benefit finding behaviors in AYA with SCD.
Disclosures
No relevant conflicts of interest to declare.
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